Results from first global survey of neuroendocrine tumor (NET) patients reveal profound impact of this rare cancer on quality of life
Novartis and the International Neuroendocrine Cancer Alliance (INCA) announced the quality-of-life results from the first global survey of patients with neuroendocrine tumors (NETs), a rare type of cancer1. Nearly 2,000 patients from 12 countries completed the survey, which was a collaborative effort between INCA and Novartis. The results were presented at a medical meeting and provide compelling data documenting the impact of NETs on people living with this disease1. These quality-of-life findings are the first in a series of results from the survey being released in conjunction with Worldwide NET Cancer Awareness Day (WNCAD), November 10.
The survey results showed that the vast majority of respondents (71%) reported their quality of life was negatively affected by their disease and up to 92% made lifestyle changes as a result of their NET1. Specific areas impacted by NETs include work, emotional health and lifestyle1.
“This is the first time the NET patient experience has been quantified on a global level, and it confirms for us the devastating impact this rare cancer can have on patients’ lives,” said Teodora Kolarova, INCA President. “We hope these survey findings help give people with this type of cancer a voice, and educate the public and healthcare professionals about the personal side of this disease.”
Among those who were currently working (39% of respondents), nearly half (49%) had to take days off work due to their NET1. For respondents who were not working or were unemployed because of medical disability (22%), the majority had stopped working as a result of their NET (82%)1. Approximately half of the respondents reported an increase of their time (52%) and the amount of money (51%) spent on medical appointments1.
The survey also measured the toll that having a NET can have on patients’ emotional health and lifestyle. Most respondents (60%) noted that their emotional health had been affected “a moderate amount” or “a lot” by their NET. Additionally, more than half worry about the uncertainty of their future (58%), with 52% reporting having to deal with significant stress and anxiety levels1. Nearly two-fifths of respondents (39%) feel confused about the management of their disease1. Patients also reported that their NET affects their overall energy levels (70%), diet (58%), ability to participate in leisure activities (54%) and social life (43%), and limited their physical activities (49%), with many (43%) unable to participate in activities they used to enjoy1.
Since NETs are uncommon, awareness about the disease is very limited. Neuroendocrine tumors arise in different tissues and organs throughout the body that contain neuroendocrine cells; most are found in the gastrointestinal (GI) tract, lungs and pancreas, and they are categorized as symptomatic (functional) or asymptomatic (non-functional)2,3,4,5. Signs and symptoms of NETs include, but are not limited to: flushing, diarrhea, intermittent abdominal pain, wheezing, coughing and bloody sputum6,7. Nonfunctional NETs do not produce any hormonal symptoms and can be more difficult to diagnose5. Even symptomatic patients are often misdiagnosed because their symptoms can be similar to those of other diseases and conditions (e.g., colitis, irritable bowel syndrome and asthma)7. For these reasons, NETs are often initially diagnosed at an advanced stage5.
“This collaboration between INCA and Novartis has yielded tremendous information about the NET patient experience around the world,” said Grace Goldstein, immediate past president, INCA. “The survey shows how difficult it can be to live with a NET, and we hope that these insights can help drive conversations and action to better understand and meet the needs of NET patients everywhere.”
The Novartis collaboration with INCA is part of the company’s longstanding commitment to improving knowledge and management of NETs, engaging with patient groups to better understand the patient experience and helping the patient community to raise its voice. Results from the survey related to quality of life were presented at the North American NeuroEndocrine Tumor Society (NANETS) symposium in Nashville, TN, USA, October 10-11, 2014.
About the survey
The goal of the Global NET Patient Survey was to increase understanding of the experiences, needs and challenges of NET patients, and provide insights and learnings between countries and regions to advance NET care on a global level1.
The Global NET Patient Survey was fielded between February 2014 and May 31, 2014, and included 1,928 patients from 12 countries1. The survey was made available in eight languages, and participating INCA member organizations invited NET patients to participate in the 25-minute online anonymous survey via flyers, website postings, emails and social media channels1. Paper surveys were developed in several languages and distributed at patient group meetings and through healthcare professionals to reach patients without access to the Internet. The data are being analyzed at the global, regional and country levels1.
The survey gathered information on the NET patient experience, including diagnosis, disease impact and management, quality of life, and knowledge and awareness levels. The quality-of-life results are the first data to be released and additional findings will follow.
The survey was developed through a collaborative effort between INCA and Novartis and was fielded by Hall & Partners USA, LLC, a research organization based in New York with offices around the world. Survey participation was voluntary and not subject to any compensation1.
1. Novartis and INCA Global NET Patient Survey Report: Global Results. Data on File.
2. National Cancer Institute. Dictionary of Cancer Terms: neuroendocrine tumor. Available at: http://www.cancer.gov/dictionary. Accessed October 2014.
3. Yao, et al.One Hundred Years After “Carcinoid:” Epidemiology of and Prognostic Factors for Neuroendocrine Tumors in 35,825 Cases in the United States. J Clin Onc. 2008; 26:3063-72.
4. Akerstrom, et al. Timing and extent of surgery in symptomatic and asymptomatic neuroendocrine tumors of the pancreas in MEN 1. Langenbecks Arch Surg. 2002; 386(8):558-69.
5. Modlin, et al. Priorities for Improving the Management of Gasteroenteropancreatic Neuroendocrine Tumors. J Natl Cancer Inst. 2008; 100:1282-1289.
6. Hage, et al. Update in Pulmonary Carcinoid Tumors: A Review Article. Ann Surg Oncol. 2003; 10:697-704.
7. Mamikunian, et al. Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management: 4th ed. Available at http://www.interscienceinstitute.com/docs/Neuroendocrine-Tumors-4th-Edition.pdf. Accessed October 2014.